Educate Yourself
FSHD is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and FSHD in particular.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Latest Blog Posts
Dan Levy’s FSHD family story
If you’ve been on our social media channels, you may have seen our posts about actor Dan Levy’s Omaze campaign to raise funds for the FSHD Society but you may not know his family story and his connection to FSHD. Dan and his father, Eugene Levy, are actors and co-creators of Schitt$ Creek, a Canadian…
The Future is Now for Clinical Trials
Our community has been promised for decades that “one day in the future” there will be treatments for FSHD, and so it’s amazing to realize that day has arrived. The future is NOW for clinical trials. In 2019, we saw…
Upcoming Events
Nov
20
FSHD Radio welcomes Levi Benson and Jenny Hasenjaeger
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made...
Find out more »Dec
7
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process,...
Find out more »FSHD Radio – December show
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST - topic TBD
Find out more »
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).